@Laurianna, Welcome to our forum!
I’m sorry you have several major health challenges going on at once. You’re the first person I recall noting that you have nose pain which I also had & was able to have my ENT confirm it was from my trigeminal nerve. That pain is gone since I had my left styloid removed. I had many other symptoms, some similar to yours which have mostly gone away since my styloidectomies (both of mine were long) in 2014 & 2015.
You noted your symptoms are worse when you look down. This may be because of what Jules told you but also may be due to the loss of the curve in your cervical spine. Our necks have a curve in them that forms naturally when we are babies as we lift our heads up & arch our backs in preparation for crawling. As we age & do a lot of work looking down & especially now w/ computers & cell phones, that natural curve can straighten out & having straight cervical vertebrae puts a lot of stress on the upper spine which can refer down to the mid & lower spine where there are nerves that affect the legs & feet. The neck curve can be restored but it takes time and may require physical therapy. One of our members put together a list of information and videos about the neck which might help you, too.
@Jules has offered you a number of non-surgical options to try to see if any of them help relieve your symptoms, but I also want to share the name of a doctor in Turkey whom we recently became aware of and who is very experienced w/ ES. Seeing him if you are able to might give you some answers. We now have had some members from the US call him for a consult or travel to see him for help w/ ES.
•Dr. Kamran Aghayev - https://kamranaghayev.com
Please let us know the results if you get a new CT scan.
